Friday, March 30, 2012

PCI-32765 and Ofatumumab Trial Update: Sirens blare and more rashes and sore muscles

I beat the storm back from shul where I said Kaddish for my father. The severe weather sirens wailed a few minutes after I enter the house. Right now, the thunderclaps are right overhead and the lightening is like a 60's strobe show and the rain is falling in torrents.

This time I knew what those sirens meant and what to do to be safe.

Wish I could say the same about my new rash on my left arm.

My left elbow has been sore since I worked out at the gym three days ago with a sweet college student as my trainer. It got a bit worse when I returned again yesterday, but with the dexamethasone aboard for my third infusion from one day earlier I was feeling no pain.... until last night. Been swimming, and enjoying the jacuzzi and sauna too.

Late last night, my elbow stated to swell a little especially up into my medial triceps where my muscle was so sore. It was bright fire engine red with sharp borders, like a welt or hive. And the pain in my arm increased.

The flaming redness faded over a few hours, but a faint flat confluent pinkish rash now reaches from nearly to my wristband more than half way up my triceps and is spreading.

Dr. Byrd's very kind and smart PA, Margaret thought it might be a skin infection. Heck, my immunity is zilch after the steroids suppress everything and the ofatumumab decimate my B cells. And oh yeah, I have CLL.

I don't think the culprit was the IV. It doesn't look or feels like that kind of inflammation. But a micro abrasion at the college gym, a known popular gathering place for germs, could have lead to a staph or strep infection. The sauna and jacuzzi are suspect too.

Like a good patient, I started on the prescribed dicloxacillin, an old school narrow spectrum oral penicillin that has enhanced activity against staph, but not MRSA.

Better to be safe. That is if the dicloxacillin will make me safe. If we are treating the right thing.

After initially resisting the diagnosis of cellulitis, I am now pretty convinced and worried that if it doesn't turn around soon, I may need IV antibiotics.

I saw Dr. Byrd last on March 19, got bad news later that day after he had left, and will not see him again until April 11 at the earliest to discuss what it all means.

Frustrating, but I understand he may want to sit down and talk face to face in a non rushed setting to give me his experienced perspective.

This is no fun.

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2 Comments:

Anonymous Anonymous said...

Brian,
I hope April 11 comes upon you quickly and you and Dr. Byrd can approach whatever the new situation is with a potential solution.

Worrying is as bad as the facts, and sometimes worse, so I feel for you, as you have to keep a lid on your reactions to whatever it is until you can discuss it w your doctor in full.

I am sure all of your fan club are as concerned as I am, and remember that any one of us, or all of us, would come forward to help in any way possible - if there is any thing that can be of any assistance.

Since I don't know what has come up, I can just wish for a very, very quick two weeks and then confirmation that under-reacting was quite appropriate.

Heléne

March 30, 2012 at 6:40 PM  
Anonymous jcleri said...

Guess I am happy that I am not a doctor and don't understand the ins and outs of CLL or any other disease that I come in contact with. Too much knowledge is sometimes just too much.....

Prayers and more prayers.

Judy C.

March 31, 2012 at 1:51 PM  

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